Low EF: Getting an S-ICD. Any tips, experience to share?

Posted by bevh @bevh, May 12 1:03pm

Dr says I can’t take any drugs to improve on this because of my low blood pressure. Now, because of my low ejection fraction (35%) dr says I need an implantable defibrillator. Anyone know of any other way to increase this?

@bevh Hi and welcome to connect. I am not sure of any particular way to increase your EF factor but I will share my particular situation and it may help. Please be aware I am not a doctor and I'm only sharing my particular case.
I also had a very low ef after a infection that caused my Heart to get larger which is not good for it. I was told that my EF was 5% when I was advised that i would be a good candidate to get a pacemaker with defibrillator. It is true I was also put on medication but was told it was all to help get me stronger. so this was 2008 and for quite a few years I got better and my ef got better. I would get tested every year and my ef did improve up to about 50 which for someone my age at the time was ok. Now I dont have low blood pressure so I don't know how that plays a role in your case. I will go on to say that my situation got worse in other areas and that pacemaker saved my life a few times because I also had developed a condition of Ventricle Tachycardia or a very high heart beat that can be deadly hence the reason for the defibrillator .
So I would probably ask your doctor why He or She feels you need one. I an also interested that for low EF why a defibrillator since for me it was due to the possibility of a serious condition that would not give you time to get medical help. For me i would get in a condition where sometime seconds count. I lived for years with an EF that was under 35 and worked full time in a very physical type job and the low EF wasn't a factor. I was once told later when my VT was getting real bad that they didn't consider an ef being low until under 30. The meds I was on was for the fast heartbeat mostly. I hope this helps, Please keep us updated and we are here to help if we can.
Have a Blessed Day
Dana

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Hi, since 2005 my Doctors discovered I had an ejection level at 12%. My body began to fill up with fluid to the point I could not walk. Also, 2 days later I was diagnosis with Uterine Cancer. Since, my ejection fraction were so low I could not have surgery.

I heard about heart rehab at McConnell Heart rehab here in Columbus, Ohio. I immediately checked this out because I needed to rebuild my heart muscle. My 1st heart physician refused to send over an order. His reasoning, I would kill myself. All he wanted to do was do a dyfibulator and I refused. Got a 2nd opinion and the physician said it was the best thing for me to do at that point. He went onto say they do a complete work up on me to see if I would qualify before starting.

Well, did the testing, and I was cleared for that program. In 6 weeks I raised my ejection fractions to 34% and with medication in 6 months my heart was at 48%. Over the following years my ejection fractions has been a steady 50%.

Yes, I've had one set back and I eventually had to have dyfibulator but that was because my physician did not monitor my medications correctly.

So, my piece of advice find a heart rehab center and work with them. They truly made a difference in my life. And by the way had the surgery 6 months after my diagnosis. And the physicians and family could not believe I was back at work in a week. All due to the heart rehab program.

Get exercising it makes a world of difference in short time..

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@maddie3211

Hi, since 2005 my Doctors discovered I had an ejection level at 12%. My body began to fill up with fluid to the point I could not walk. Also, 2 days later I was diagnosis with Uterine Cancer. Since, my ejection fraction were so low I could not have surgery.

I heard about heart rehab at McConnell Heart rehab here in Columbus, Ohio. I immediately checked this out because I needed to rebuild my heart muscle. My 1st heart physician refused to send over an order. His reasoning, I would kill myself. All he wanted to do was do a dyfibulator and I refused. Got a 2nd opinion and the physician said it was the best thing for me to do at that point. He went onto say they do a complete work up on me to see if I would qualify before starting.

Well, did the testing, and I was cleared for that program. In 6 weeks I raised my ejection fractions to 34% and with medication in 6 months my heart was at 48%. Over the following years my ejection fractions has been a steady 50%.

Yes, I've had one set back and I eventually had to have dyfibulator but that was because my physician did not monitor my medications correctly.

So, my piece of advice find a heart rehab center and work with them. They truly made a difference in my life. And by the way had the surgery 6 months after my diagnosis. And the physicians and family could not believe I was back at work in a week. All due to the heart rehab program.

Get exercising it makes a world of difference in short time..

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@maddie3211 I am so glad that you reported that success story about cardiac rehab. It really does make a difference! I hope that all heart-failure patients will take your post to heart and be aware of the benefits of cardiac rehab for heart problems.

Did your surgery for uterine cancer go well?

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Well I am back after not posting and asking questions about my low EF for the last couple years. I am 69 years old today. Back in 2013 I was diagnosed with cardiomyopathy. My EF went from 45% back then to 40% last year, up until last week. I was surprised, my lastest echo revealed an estimated EF of 80%. A bit high and will continued to monitored. 10% over compensation, of the recommended high of 70%. Most likely I have nothing to worry about. A EF of 40% – 45% was considered mildly impaired, regardless, it was a scare for me and I worried about my health and life longevity. I contributed my improvement to my medication, grand babies and the drastic changes I made of my habits, healthy diet, weight loss and excerise and excersice! I worked hard and disciplined myself to get better. My wife and I turned out basement into a gym, and instead of watching TV and snacking in the evening, we would work out for at least an hour plus everyday. In the summer we would go on 15 – 20 mile bike rides 4 times a week. Believe me I had other aches and pains, but worked through them. It took a good year to work our self up to a good steady routine, but we never gave up. I lost 40 pounds, sure over the holidays I cheated with some sweats and salt its just human nature. My point is, if your diagnosed with a heart condition, don't sit around felling sorry for yourself, stay off the internet reading articles it will drive you crazy. Consult your doctor and do something about it. Start out slow and work your way up. 2013 and before I was just a lump and didn't care much about my health.

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@hopeful33250

@maddie3211 I am so glad that you reported that success story about cardiac rehab. It really does make a difference! I hope that all heart-failure patients will take your post to heart and be aware of the benefits of cardiac rehab for heart problems.

Did your surgery for uterine cancer go well?

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Hi! Yes, my surgery went very well and I credit this to my heart rehab. It has been 15 years cancer free! Yes, not only did I face heart disease but cancer at the same time. It was like I hit a brick wall. Thank you for reading my reply. Hope, you are doing as welll. Maddie

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@fishinpete

Well I am back after not posting and asking questions about my low EF for the last couple years. I am 69 years old today. Back in 2013 I was diagnosed with cardiomyopathy. My EF went from 45% back then to 40% last year, up until last week. I was surprised, my lastest echo revealed an estimated EF of 80%. A bit high and will continued to monitored. 10% over compensation, of the recommended high of 70%. Most likely I have nothing to worry about. A EF of 40% – 45% was considered mildly impaired, regardless, it was a scare for me and I worried about my health and life longevity. I contributed my improvement to my medication, grand babies and the drastic changes I made of my habits, healthy diet, weight loss and excerise and excersice! I worked hard and disciplined myself to get better. My wife and I turned out basement into a gym, and instead of watching TV and snacking in the evening, we would work out for at least an hour plus everyday. In the summer we would go on 15 – 20 mile bike rides 4 times a week. Believe me I had other aches and pains, but worked through them. It took a good year to work our self up to a good steady routine, but we never gave up. I lost 40 pounds, sure over the holidays I cheated with some sweats and salt its just human nature. My point is, if your diagnosed with a heart condition, don't sit around felling sorry for yourself, stay off the internet reading articles it will drive you crazy. Consult your doctor and do something about it. Start out slow and work your way up. 2013 and before I was just a lump and didn't care much about my health.

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I am so glad to hear that you have made so much progress! I appreciate your reporting on the benefits of exercise, @fishinpete. Both you and @maddie3211 are encouragers in this force against heart failure.

Liked by lioness

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@maddie3211

Hi! Yes, my surgery went very well and I credit this to my heart rehab. It has been 15 years cancer free! Yes, not only did I face heart disease but cancer at the same time. It was like I hit a brick wall. Thank you for reading my reply. Hope, you are doing as welll. Maddie

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Correction on my EF. I reported my EF was 80% after my echo. It improved to 55% not 80% . It was a misprint on my medical report that was emailed to me. Still happy with my results.

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Getting an s-Icd tomorrow. Any advice, tips, experience to share?

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@bevh

Getting an s-Icd tomorrow. Any advice, tips, experience to share?

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@bevh Hi and Welcome to connect. I had one for almost 10 years so if you have any questions maybe I can help. I see from.a prior post that your ef is about 38 % so I can see why your getting one. As to the surgery itself they will build what they call a pocket usually in your upper left chest area and will be putting leads from.there down into your heart in different parts. There is a healing process which will require no heavy lifting and you usually are not allowed to raise your arms over your shoulder height. It will be baths only for a bit until the incision heals before showers are allowed. I think I was on light duty for 6 weeks at work while everything heals. It's important to follow the orders since the most critical part is that the wires build scar tissue over them. The replacement of those wires is a bit difficult in the future if they fail. Every so many years you will need a new battery mine was about 5 years but that was a while ago and they may last longer now. When a replacement of the main unit due to the battery is a rather easy surgery and won't require much healing time. But if a lead fails it's a more complex procedure so you would have a longer recovery like what you will have on the first time.

You will probably get a home unit that can get updates from.your device every so often while your sleeping and it will also alert your Doctor if something happens they are watching even if you don't notice. I always liked that part because it gave me a bit of confidence that my heart was being monitored. I also liked hearing during office visits when they would download your device and could see any minor issues. Well im available if you think of any questions. One saved my life on a few occasions and glad I had it. Your probably notice im.talking past tense. My Heart was pretty bad shape my ef was only 5 %/when I got mine and after about 10 years my Heart just gave out. I now have a new Heart but I am very glad of the days that the Pacemaker helped me. I was able to live a normal life and allowed me to continue to work in a career I enjoyed very much. As a note with the pacemaker monitoring things, some medications also my old Heart did recover to a 50 % EF.
Let us know how it goes, I look forward to hearing back when your recovered. I'll include you in my prayers for a speedy recovery.
Have a Blessed Day
Dana

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@bevh

Getting an s-Icd tomorrow. Any advice, tips, experience to share?

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Hi @bevh, as you will see, I merged your two discussions. The benefit of keeping like conversations together is so you don't have to keep up with two different discussions and it affords everyone who replied an update on how you are doing and what is happening with you moving forward with the placement of the subcutaneous implantable cardioverter defibrillator. You might be interested in a news post that Mayo shared about these defibrillators as well as a discussion where Connect members are talking about implantable cardioverter-defibrillators (ICDs).
– What is an implantable cardioverter-defibrillator (ICD)? https://connect.mayoclinic.org/page/genetic-heart-rhythm-disorders/newsfeed-post/what-is-an-implantable-cardioverter-defibrillator-icd/

– Understanding ICDs – Implantable Cardioverter Defibrillator https://connect.mayoclinic.org/discussion/understanding-icds-implantable-cardioverter-defibrillator/

Can you share how you came to the decision to have one placed?

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@amandaburnett

Hi @bevh, as you will see, I merged your two discussions. The benefit of keeping like conversations together is so you don't have to keep up with two different discussions and it affords everyone who replied an update on how you are doing and what is happening with you moving forward with the placement of the subcutaneous implantable cardioverter defibrillator. You might be interested in a news post that Mayo shared about these defibrillators as well as a discussion where Connect members are talking about implantable cardioverter-defibrillators (ICDs).
– What is an implantable cardioverter-defibrillator (ICD)? https://connect.mayoclinic.org/page/genetic-heart-rhythm-disorders/newsfeed-post/what-is-an-implantable-cardioverter-defibrillator-icd/

– Understanding ICDs – Implantable Cardioverter Defibrillator https://connect.mayoclinic.org/discussion/understanding-icds-implantable-cardioverter-defibrillator/

Can you share how you came to the decision to have one placed?

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My doctor said with my low ef it would be wise to have one

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@bevh

My doctor said with my low ef it would be wise to have one

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What is your EF? NUMBER

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35%

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